question about gi problems

[kaylinsmom]

Thanks for all the help!! I have some great questions to ask the doc when we go back. I will definately ask him about ambry.
<br /> As for Kaylins meds, she is on advair (which they just increased the mcg's), singulair, prevacid, miralax, multi-vitamin, and albuterol (as needed). Her pft's showed a 17% change after the albuterol the last time we went and thats why they increased the advair. But her pft's are normally at 95%. They have been lower and they have been higher. I dont know what normal is for the pft's but the pulmo says that 95% is pretty good. Thanks so much!

 

[jmom]

Hi Kaylinsmom! I was just reading about your child's fecal fat test and sweat tests. We've been through similar test frustrations, so maybe we can help each other. We've been working on a diagnosis for three years now for our 7 year old daughter. She's had odd, foamy, loose and floating stool for 5 years now, and 3 years ago she had some GI bleeding episodes, she's gone through 3 colonoscopies, had several significant findings on biopsies during these procedures but none of them led to a diagnosis. Her sweat tests were in the mid 30's the first time, and then dropped way down to 20. I ask myself, is it possible for a sweat test to vary by that much??? She's had one positive fecal fat test indicating fat malabsorption, and then one just came back last week negative. We are waiting on a pancreatic elastase test. I am planning on asking for genetic testing. Almost every stool of hers floats. I'm curious if anyone knows whether these stool tests (fecal fat or pancreatic elastase) vary depending on whether our children are symptomatic at the time? Well, good luck with figuring out what's going on.

 

[jmom]

Hi Kaylinsmom! I was just reading about your child's fecal fat test and sweat tests. We've been through similar test frustrations, so maybe we can help each other. We've been working on a diagnosis for three years now for our 7 year old daughter. She's had odd, foamy, loose and floating stool for 5 years now, and 3 years ago she had some GI bleeding episodes, she's gone through 3 colonoscopies, had several significant findings on biopsies during these procedures but none of them led to a diagnosis. Her sweat tests were in the mid 30's the first time, and then dropped way down to 20. I ask myself, is it possible for a sweat test to vary by that much??? She's had one positive fecal fat test indicating fat malabsorption, and then one just came back last week negative. We are waiting on a pancreatic elastase test. I am planning on asking for genetic testing. Almost every stool of hers floats. I'm curious if anyone knows whether these stool tests (fecal fat or pancreatic elastase) vary depending on whether our children are symptomatic at the time? Well, good luck with figuring out what's going on.

 

[jmom]

Hi Kaylinsmom! I was just reading about your child's fecal fat test and sweat tests. We've been through similar test frustrations, so maybe we can help each other. We've been working on a diagnosis for three years now for our 7 year old daughter. She's had odd, foamy, loose and floating stool for 5 years now, and 3 years ago she had some GI bleeding episodes, she's gone through 3 colonoscopies, had several significant findings on biopsies during these procedures but none of them led to a diagnosis. Her sweat tests were in the mid 30's the first time, and then dropped way down to 20. I ask myself, is it possible for a sweat test to vary by that much??? She's had one positive fecal fat test indicating fat malabsorption, and then one just came back last week negative. We are waiting on a pancreatic elastase test. I am planning on asking for genetic testing. Almost every stool of hers floats. I'm curious if anyone knows whether these stool tests (fecal fat or pancreatic elastase) vary depending on whether our children are symptomatic at the time? Well, good luck with figuring out what's going on.

 

[kaylinsmom]

I know how you feel! Kaylin took a turn for the worse last November. She really wasn't sick before that, other than allergies and a regular cough. She had tubes in her ears and adenoids taken out but that was it. Last November she was hospitalized for swine flu and pneumonia and got it 2 more times that winter. Her lung collapsed in April and so far its been a pretty good summer. She had complained of her head hurting and her stomach but no antibiotics or hospital visits! Thanks to everyone here that is so knowledgable, I have a list of questions for the doc when we go back and I am going to request ambry. Hope you find all your answers with your little one.

 

[kaylinsmom]

I know how you feel! Kaylin took a turn for the worse last November. She really wasn't sick before that, other than allergies and a regular cough. She had tubes in her ears and adenoids taken out but that was it. Last November she was hospitalized for swine flu and pneumonia and got it 2 more times that winter. Her lung collapsed in April and so far its been a pretty good summer. She had complained of her head hurting and her stomach but no antibiotics or hospital visits! Thanks to everyone here that is so knowledgable, I have a list of questions for the doc when we go back and I am going to request ambry. Hope you find all your answers with your little one.

 

[kaylinsmom]

I know how you feel! Kaylin took a turn for the worse last November. She really wasn't sick before that, other than allergies and a regular cough. She had tubes in her ears and adenoids taken out but that was it. Last November she was hospitalized for swine flu and pneumonia and got it 2 more times that winter. Her lung collapsed in April and so far its been a pretty good summer. She had complained of her head hurting and her stomach but no antibiotics or hospital visits! Thanks to everyone here that is so knowledgable, I have a list of questions for the doc when we go back and I am going to request ambry. Hope you find all your answers with your little one.

 

[jmom]

Hi! Looks like we are in the same boat right now...requesting genetic testing...questionable sweat tests...wondering about GI problems and test reliability. Not to mention that our daughters are the same age!!! Let's keep in touch and support each other! Concerning the fecal fat test, was it the one-time stool collection or the 72-hour test? My daughter's second-opinion doctor at Stanford says she doesn't trust the one-time fecal fat collection. Again, my daughter has had one positive for fat malabsorption and one negative. Go figure? By the way, several moms here have mentioned that they heard that an elastase test from 200-500 is panc. sufficient, but that most NON-CF kids should have numbers near or above 500. My daughter's test came back "less than 500". I asked "How much less?" and the doctor said the lab didn't specify! I'd like to know because if it was 201, we're looking at borderline PI, and if it's 499, we're leaning more toward maybe not having CF? Where can I research the idea that NON-CF kids should have elastase numbers around or above 500? Thanks so, so much!

 

[jmom]

Hi! Looks like we are in the same boat right now...requesting genetic testing...questionable sweat tests...wondering about GI problems and test reliability. Not to mention that our daughters are the same age!!! Let's keep in touch and support each other! Concerning the fecal fat test, was it the one-time stool collection or the 72-hour test? My daughter's second-opinion doctor at Stanford says she doesn't trust the one-time fecal fat collection. Again, my daughter has had one positive for fat malabsorption and one negative. Go figure? By the way, several moms here have mentioned that they heard that an elastase test from 200-500 is panc. sufficient, but that most NON-CF kids should have numbers near or above 500. My daughter's test came back "less than 500". I asked "How much less?" and the doctor said the lab didn't specify! I'd like to know because if it was 201, we're looking at borderline PI, and if it's 499, we're leaning more toward maybe not having CF? Where can I research the idea that NON-CF kids should have elastase numbers around or above 500? Thanks so, so much!

 

[jmom]

Hi! Looks like we are in the same boat right now...requesting genetic testing...questionable sweat tests...wondering about GI problems and test reliability. Not to mention that our daughters are the same age!!! Let's keep in touch and support each other! Concerning the fecal fat test, was it the one-time stool collection or the 72-hour test? My daughter's second-opinion doctor at Stanford says she doesn't trust the one-time fecal fat collection. Again, my daughter has had one positive for fat malabsorption and one negative. Go figure? By the way, several moms here have mentioned that they heard that an elastase test from 200-500 is panc. sufficient, but that most NON-CF kids should have numbers near or above 500. My daughter's test came back "less than 500". I asked "How much less?" and the doctor said the lab didn't specify! I'd like to know because if it was 201, we're looking at borderline PI, and if it's 499, we're leaning more toward maybe not having CF? Where can I research the idea that NON-CF kids should have elastase numbers around or above 500? Thanks so, so much!

 

[jmom]

Hi! Looks like we are in the same boat right now...requesting genetic testing...questionable sweat tests...wondering about GI problems and test reliability. Not to mention that our daughters are the same age!!! Let's keep in touch and support each other! Concerning the fecal fat test, was it the one-time stool collection or the 72-hour test? My daughter's second-opinion doctor at Stanford says she doesn't trust the one-time fecal fat collection. Again, my daughter has had one positive for fat malabsorption and one negative. Go figure? By the way, several moms here have mentioned that they heard that an elastase test from 200-500 is panc. sufficient, but that most NON-CF kids should have numbers near or above 500. My daughter's test came back "less than 500". I asked "How much less?" and the doctor said the lab didn't specify! I'd like to know because if it was 201, we're looking at borderline PI, and if it's 499, we're leaning more toward maybe not having CF? Where can I research the idea that NON-CF kids should have elastase numbers around or above 500? Thanks so, so much!

 

[jmom]

Hi! Looks like we are in the same boat right now...requesting genetic testing...questionable sweat tests...wondering about GI problems and test reliability. Not to mention that our daughters are the same age!!! Let's keep in touch and support each other! Concerning the fecal fat test, was it the one-time stool collection or the 72-hour test? My daughter's second-opinion doctor at Stanford says she doesn't trust the one-time fecal fat collection. Again, my daughter has had one positive for fat malabsorption and one negative. Go figure? By the way, several moms here have mentioned that they heard that an elastase test from 200-500 is panc. sufficient, but that most NON-CF kids should have numbers near or above 500. My daughter's test came back "less than 500". I asked "How much less?" and the doctor said the lab didn't specify! I'd like to know because if it was 201, we're looking at borderline PI, and if it's 499, we're leaning more toward maybe not having CF? Where can I research the idea that NON-CF kids should have elastase numbers around or above 500? Thanks so, so much!

 

[jmom]

Hi! Looks like we are in the same boat right now...requesting genetic testing...questionable sweat tests...wondering about GI problems and test reliability. Not to mention that our daughters are the same age!!! Let's keep in touch and support each other! Concerning the fecal fat test, was it the one-time stool collection or the 72-hour test? My daughter's second-opinion doctor at Stanford says she doesn't trust the one-time fecal fat collection. Again, my daughter has had one positive for fat malabsorption and one negative. Go figure? By the way, several moms here have mentioned that they heard that an elastase test from 200-500 is panc. sufficient, but that most NON-CF kids should have numbers near or above 500. My daughter's test came back "less than 500". I asked "How much less?" and the doctor said the lab didn't specify! I'd like to know because if it was 201, we're looking at borderline PI, and if it's 499, we're leaning more toward maybe not having CF? Where can I research the idea that NON-CF kids should have elastase numbers around or above 500? Thanks so, so much!

 

[kaylinsmom]

jmom, I am not sure about which fecal test we did. But that is on my list of questions for the doctor. I just collected a sample and took it to the pulmo. It was very greasy. But they said the results were in the normal range. But her poop is sometimes funny in color, like gray or light greenish-yellow. It has been like teal blue too! She complains alot of her stomach hurting. But the miralax has helped alot. I have her on a good diet with fruits and veggies and lots of protein. We drink raw milk because it is so much better and easier to digest. We go back to the pulmo sept. 14 and it cannot come fast enough! I want ambry done. Ihave never heard of the elastase test before? I have no clue about my daughters number of the sample I took in. I will have to ask about that too! Thanks for responding. Just curious, was your daughter a healthy toddler? Was her weight and all good as a baby? I am asking this because Kaylin was extremely healthy until she turned 3. She never even had a cold or anything other than seasonal allergies. Erin

 

[kaylinsmom]

jmom, I am not sure about which fecal test we did. But that is on my list of questions for the doctor. I just collected a sample and took it to the pulmo. It was very greasy. But they said the results were in the normal range. But her poop is sometimes funny in color, like gray or light greenish-yellow. It has been like teal blue too! She complains alot of her stomach hurting. But the miralax has helped alot. I have her on a good diet with fruits and veggies and lots of protein. We drink raw milk because it is so much better and easier to digest. We go back to the pulmo sept. 14 and it cannot come fast enough! I want ambry done. Ihave never heard of the elastase test before? I have no clue about my daughters number of the sample I took in. I will have to ask about that too! Thanks for responding. Just curious, was your daughter a healthy toddler? Was her weight and all good as a baby? I am asking this because Kaylin was extremely healthy until she turned 3. She never even had a cold or anything other than seasonal allergies. Erin

 

[kaylinsmom]

jmom, I am not sure about which fecal test we did. But that is on my list of questions for the doctor. I just collected a sample and took it to the pulmo. It was very greasy. But they said the results were in the normal range. But her poop is sometimes funny in color, like gray or light greenish-yellow. It has been like teal blue too! She complains alot of her stomach hurting. But the miralax has helped alot. I have her on a good diet with fruits and veggies and lots of protein. We drink raw milk because it is so much better and easier to digest. We go back to the pulmo sept. 14 and it cannot come fast enough! I want ambry done. Ihave never heard of the elastase test before? I have no clue about my daughters number of the sample I took in. I will have to ask about that too! Thanks for responding. Just curious, was your daughter a healthy toddler? Was her weight and all good as a baby? I am asking this because Kaylin was extremely healthy until she turned 3. She never even had a cold or anything other than seasonal allergies. Erin

 

[jmom]

If the fecal fat test was a one-time collection, it was the one that is not as reliable. I would have the test repeated and collect a stool that looks suspicious. My daughter was born a good size and really didn't have any digestion problems until 2 or 3 years old. She looks healthy, not too skinny, not overweight, but she eats like a horse! Somedays she's always hungry, especially when symptomatic. We see weird patchy colors too in her stool, and it's not because she ate a fruit roll-up or something with food coloring! Pale or green or yellow and patched together like playdough! funny, huh?

 

[jmom]

If the fecal fat test was a one-time collection, it was the one that is not as reliable. I would have the test repeated and collect a stool that looks suspicious. My daughter was born a good size and really didn't have any digestion problems until 2 or 3 years old. She looks healthy, not too skinny, not overweight, but she eats like a horse! Somedays she's always hungry, especially when symptomatic. We see weird patchy colors too in her stool, and it's not because she ate a fruit roll-up or something with food coloring! Pale or green or yellow and patched together like playdough! funny, huh?

 

[jmom]

If the fecal fat test was a one-time collection, it was the one that is not as reliable. I would have the test repeated and collect a stool that looks suspicious. My daughter was born a good size and really didn't have any digestion problems until 2 or 3 years old. She looks healthy, not too skinny, not overweight, but she eats like a horse! Somedays she's always hungry, especially when symptomatic. We see weird patchy colors too in her stool, and it's not because she ate a fruit roll-up or something with food coloring! Pale or green or yellow and patched together like playdough! funny, huh?

 

[Ratatosk]

DS' were every color of the rainbow -- mainly greenish, yellowish with green flecks, sometimes orange. Similar to what you're describing. I'd never seen normal stool from DS until last summer when we finally got his digestive issues under control after a bowel obstruction.

Now that his digestive tract seems to be working, his enzymes are working and we have normal brown stools. Except yesterday when he had a blue and green jolly rancher popscicle. Then all bets are off <img src="i/expressions/face-icon-small-smile.gif" border="0">